surgery or not

Would love to hear from those of you who opted for surgery and those of you who opted out. I am at a point where some days I feel I need surgery then other days I feel great. The ebbs and flow of this thing is so frustrating. My symptoms: dizziness, imbalance, speech probs, muscle twitching, numbness, headache - all comes and goes.

I work out 4 days a week - lift heavy weights and unlike many I think lifting actually helps me in the long run - I can't figure this out. But I have been dx with a Chiari of 3-5mm... (1 mri showed 3 mm, 1 showed 5 mm) - I have seen Dr. Di who was thoroughly convinced my symptoms were from Chiari and not the other bull diagnosis's I had been given in the past. But my main question - surgery or not?

Some say do surgery you will feel better - others say hold out to the bitter end...What is all your opinions on all this!

Thanks for your input

DAWGS

[Suzmd66]

Hi,

I am new to this forum but read your post as you are one of the few "men" on it. My son is a CMType 1 decompression survivor and he is 18 yo. He had the decompression 2 yrs ago at 16. I've found it difficult to get male input for him.

About having surgery or not, we were told by his neurosurgeon at Johns Hopkins in Baltimore that if you have CSF flow blockage, the surgery is not optional. If you do not and you can deal with your symptoms, it is an elective surgery. Is this what you've been told?

Incidently, my son is an athlete...specifically, football and was told he could go back to football one healing from surgery had occurred. He did and suffered at least one more concussion...he still has daily symptoms which are nausea/vomiting/loss of appetite and vision impairment related.

Please be careful either way not to complicate your condition.
Nice to have a male to talk to about this!

[selmaS]

Hi...long time since u have been on....

And I see u r still struggling with these issues as to go with surgery or not...and like the above poster noted it is all a matter of ur condition and symptoms....u do not need surgery if  u do not have a CSF blockage or overcrowding that could lead to the formation of a syrinx or nerve damage or compression....

But, u know  how this is impacting ur life...chiari is life altering...but, surgery can affect u more then the symptoms u have now...so if ur current condition is not a threat to ur health and well being...and is something with meds or PT u can live with...then u may opt to do so.....

Many of us went yrs with the symptoms....but we also did not have a dx....but we survived....sometimes not knowing u just go on...as soon as u know, u stop....and wonder...should I live....yes...by all means, but do listen to ur body, keep under the care of a dr that is a specialist in the area of chiari....

When the time is right, u will not have to ask....u will know.

DO u have ne restrictions to ur CSF flow?

"selma"

[STL5]

After talking to the neurosurgeon, I am electing to do the surgery in April.  I have a Chiari malformation, syrinx, and CSF blockage.  My symptoms have been getting progressively worse the past 6 months.

[pamk5]

That is a very personal decision.  I am planning surgery too and am scared just like I am sure you are.  I fortunately dont have a syrinx but do have blockage.  The big thing with the syrinx is that it can destroy your spinal cord and cause paralysis.  So if I were in your situation I would make the same decision.  You will be in my thoughts and prayers.

[DAWGS]

Thanks for all your responses. I do NOT have a syrinx and my flow study showed mild posterior csf blockage but dr. Ellenbogen from UW a chiari specialist said my readings were still in the normal range.

If I do have surgery I am waiting for dr. Di to do it and he is still searching for a place to practice. Chiari is so frustrating and illusive. Right about the time I think I am feeling better...bam! Reminds me it's there...but I guess I don't need to remind any of you of that. We actually get all this :)

Thank you all for your support and care

Dawgs

[pamk5]

I was reading the post above and thought you had a syrinx, was someone else.  Dont you love the brain fog.  Alot of people are waiting on Dr Di from what I have read.  I hope he settles soon.  

[LongLifeAhead]

im 15, my mom and i are in the process of getting my surgery date set up! im hoping down the long recovery road it will be with it, ive had terrible headaches ever since i could remember and now im finding myself to lose balance, getting numb, and having a burning sensation in my neck. Hope whatever you choose works for you.

[DAWGS]

Do you know what dr e would mean by my MRI flow study - has it done twice and both times it said mild posterior blockage but dr e didn't see any problem with it and said as long as csf is getting through a 3 mm chiari would be non surgical

Dr Di disagreed...he said chiari mild but symptoms moderate and told me he was pretty confident surgery would help. He did however say the only reason he was recommending surgery to ME was because his procedure is minimally invasive and with where I'm at he wouldnt recommend me having the traditional pfd

[selmaS]

A MRI flow study is the same as a CINE MRI...it is the study of the CSF flow...to look for obstruction.

The best way I can give my understanding of this is like this.....

Many drs feel a herniation less then 5mm is not something to be concerned with....but, it is not the size of the herniation, but the blockage and overcrowding that is important as well as ur symptoms and how it is affecting u.

Ok...so look at it like this...a funnel...and u have a long piece of shoestring licorice....it goes down and thru the funnel...no matter how long it is, it will not block fluid from flowing freely thru the funnel.

However, put a gumdrop in the opening...it is short, stubby, and will block flow......


"selma"

[Suzmd66]

All I can say is be very careful before deciding to have the decomp surgery if you do not have CSF blockage or shrinx. Remember that your brain as been accustomed to living in its space without being touched.  The brain is a very, very complex part of your body and can react many ways to being interfered with.
The symptoms after surgery may be worse than what you're having now.